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Mike Thomas: Diffuse Scleroderma

My hands are all curled up and I type with one finger.

Allegheny Mountain for Mike by Shelley Ensz I am a shy person who lives on one hundred acres of wooded land in the Allegheny Mountains. I am going to make this short, but I could write ten pages.

I was diagnosed with scleroderma in 1988. Every day is an uphill struggle.

I have to go to a Veteran's Administration (VA) hospital because that is the only insurance I have. At the VA I am treated like a live cadaver. The student doctors have tried everything on me. It is to the point, since I go to a small VA, that the doctors keep passing me around saying that I am too complicated for them to treat. So nothing gets done.

My skin is so hard, that when an intravenous (IV) needs to be started, the needle bends. I have so many things wrong with me. I willl list a few. My bladder was cut out, down to the size of a walnut. I have large open sores on my left side and have had six skin grafts. Twice, they took some skin from the top of my head and that hurts.

My heart beat test showed long spikes on the bottom line and I was told that that is normal for a scleroderma patient. My intestines are almost flat. I had polyps taken out six years ago and never had a follow up. The last endoscopy on my bladder was three years ago when I was told I had cancer before the bladder surgery. So now I have a super tube (catheter) coming out of my side. And there is so much more.

I am a fifty-three-year-old Vietnam combat veteran, who was exposed to Agent Orange. I also have degenerative arthritis and so many more health problems. My hands are all curled up and I type with one finger. I never smoked in my life but I have a hard time catching my breath. It feels like there is a big mass under my lungs. I think it is because of the Agent Orange gas.

To Contact the Author

Mike Thomas
New email address needed.
Old Email Prefix: jmtreefarm
Story submitted 6-11-02
Story posted 6-27-02
Email note posted 01-19-05 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Bowel Involvement
Cancer and Scleroderma
Cardiac (Heart) Involvement
Diffuse Scleroderma
Digital Ulcers
Interstitial Cystitis (Bladder)
Pulmonary (Lung) Involvement
Sclerodactyly (Curled Hands)
Skin Fibrosis

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


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